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Yes! One is too many!

I'm trying to get an answer to the following two questions on the BPS treatment trial evidence base and wonder if anyone knows off the top of their head. I'm just looking for a very rough estimate and am not asking for anyone to do any research AHRQ did its evidence review based on studies in...

SMCI has put out a call for those in the US to contact their congressional leaders and ask them to "create and pass legislation creating a new federal ME/CFS advisory committee and programs." For those in the US, please take a minute and send a message to your two senators and one congressional...

Moderator note: This thread combines all threads on the CFSAC closure to save confusion and duplicate discussions. It includes links to information and calls for action from Solve, #MEAction and Jennie Spotila's Occupy ME blog. The US CFSAC operates under a charter which was up for renewal...

I appreciate the concern that this could exacerbate a patient's condition. BUt I've also seen the 2 day CPET be the deciding factor in a positive decision on social security disability benefits (and thus medicare health insurance) in the US. Each patient needs to be aware of the risk and make a...

I agree that the ideal is randomized clinical trials, particularly blinded ones. And I appreciate the concerns that inappropriate practices could get in. But its going to be some number of years until blinded RCTs are available. In the meantime, we have the evidence of disease experts who are...

Its all muddled. He's mixing up WHO's ICD-10 with the US specific ICD-10-CM in which CFS was put into the symptoms chapter. And the ICD-11 comment is wrong.

Yes, I agree. To me, CDE is at best a step toward aligning on particular instruments that might be used to assess different domains. But most of them are not mandatory - e.g. researchers have a list to choose from. And many - I'm guessing most - do not have what I would think of in terms of...

Totally agree that biomarkers are the answer. But we have a catch-22 since getting biomarkers requires fairly well characterized cohorts and as you note, for that we need better operationalization of how the core symptoms are assessed. While our best researchers may do a reasonable job, as you...

Just to clarify - CDC's website is dealing with clinical criteria. My comment was referring to research case definitions and the Common Data Elements (CDE) initiative. In Dr. Collins response to the MEAction request to drive consensus on research case definition and case ascertainment methods...

This could happen with all other definitions as well, including the ME-ICC. The problem isnt just the definition used, its how the definition was operationalized/how the specific definitional criteria were assessed. To my knowledge, there are no current efforts tackling that problem.

Stunning. Did they give a reason publicly or privately?

@Esther12 - thanks for posting these comments. Do you happen to know what this refers to? And what's the general opinion of BACME? I saw some educational material from them that I thought missed the boat

That's great, @eshmo and @Melanie

The IOM report was requested by the HHS, right? Yes. By multiple agencies at HHS funded this and I believe also Social Security Administration (SSA) contributed money. SSA is not part of HHS Why did the HHS requested the report in the first place? Pressure of patient organization like ME...

@Melanie Would this Tuller article on harm from GET be worth submitting? If so, how? https://undark.org/article/chronic-fatigue-graded-exercise-pace/

I'd like to reiterate Suzy's suggestion that this forum might consider identifying 2 or 3 people to keep an eye on this and also come up to speed on these systems. As Suzy noted, it takes a while to come up to speed. I started working on ICD-10-CM and DSM in 2011 and ICD-11 in 2015 and am still...

The first letter had 35 but then it was reissued with 50 signatures https://www.dropbox.com/s/o1re8sew18pzyaf/Case%20Definition%20Letter%20final%2010-25-13.pdf?dl=0

I dont see this as an either/or issue. These studies had problems with study design and methodology AND they also used case definitions that selected patients who had other fatiguing conditions. Either alone should call into question study findings - even if the studies had been conducted...

That's well overdue. Did you find something that said that? Or is it that Reeves is not listed on their definitions page? I suspect its not listed there because CDC has said its not a different definition from Fukuda, just different operationalization. They are still defending that it selects...